Biopsy results

[maria garcia]

Anyone here knows how long does it take for results from a biopsy? It was performed in they eyelid(scar tissue). Two weeks and still nothing.

[HypnoticEyez]

Maria it only took 2 days to get the results from my eyelid biopsy.

[maria garcia]

Wao, there really giving me the run around. first they said a week now they changed it to upto up to 20 days bcse there is only one doctor who does this (there excuse). Im so sick of getting lies after lies. After 14 days and my nagging they finally called the Lab and I was told most likely tomm. afternoon they will have it, I hope so. And this is the best autoimmune eye specialist in Miami FL. Ive had the worse anxiety for the past two weeks. .
Were your results accurate?

[drz]

Anyone here knows how long does it take for results from a biopsy? It was performed in they eyelid(scar tissue). Two weeks and still nothing.
They probably have the results but just haven't bothered to notify you yet. Have you called and asked? Did they have to send it across country to some place special like the Mayo Clinic? I would think you should have it by now unless all the pathologists went on vacation.

[HypnoticEyez]

Although the ophthalmologist suspected I had Wegenger's the result of my biopsy were inconclusive. I was diagnosed after having a VATS.

[maria garcia]

drz you brought a smile to my face"vacation"! Not sure I have nagged enough even emailed the doctor twice and called several times oh and the DR. who performed the biopsy too. Its crazy!! I was told in the begining that it would be sent out. They did not want to do it in the hospital Lab (not sure why). Im not sure how its soppose to work if somethingis soppose to be growing in the scar tissue, Im just making thing up in my mind to find an answer. The truth I have no answer maybe the tissue is in vacation with the pathologist. LOL!

[pberggren1]

When I had my nose biopsy done the results were in the next day.

[Thakator]

Hi Maria - - - Perhaps there is a significant difference in turn around times depending upon what is being biopsied, but I doubt it. In short, you take the sample, you cut it open if large enough, you put it under the microscope and you read what it is you're looking at. Perhaps you freeze it first - - but nothing that would seem to take as much time as yours has. Even if they had to send it off for evaluation. Mine was an open lung biopsy and the results only took 5-6 days even here in little old Kentucky. Ron

[maria garcia]

Hypnotic eyes what is VATS?

[Chris G]

Give us all their phone number! LOL.

Will be waiting to hear the results today! Keep in mind, that the results could be negative, and she could still have wg. It all depends upon whether they got a good tissue sample. For example: when they biopsy the sinuses, unless they can see an area of granulomas, it's a crap shoot! They just take random samples and hope they find one with a granuloma (this is why I refused sinus biopsies). Then, if they all come out negative, it can just mean that they missed!

Keep pushing to see a rheumatologist who specializes in wg.

[HypnoticEyez]

Maria, a VATS is a Video Assisted Thoracic Surgery. It enabled the surgeon to get a larger tissue sample of the lung without having to doing an open lung biopsy.

[Chris G]

No results yet? Do you want us all to start calling?? LOL

[maria garcia]

Chris trust me if that would work, I would have all of you calling.
After the biopsy ( last Monday) the doctors assistant told me the results should be ready by Friday and she would call me with the results and meds to take. I was the one to ask her if we should make an appointment. She said If I wanted to, so I did. I wanted her biopsied eye to be checked plus go over meds etc. But at no time did she request I did. This was 17 days ago. Ive called several times since. So I called today and she told be they will be ready when we come to the appointment tomm. I know they have them and they just don't want to tell me the results. Im so upset bcse this is not what I was told. If she would of told me I would not have called and just waited. Im so depressed not knowing why they choose to wait to tell me in our appt if it's not there dorm. Also she had been ignoring my calls today I used my friends phone and she answered right away. Tomm I will post results.( I hope)

[Dirty Don]

maria, you probably know this already, but there is a Mayo clinic in Jacksonville...don't know their departments, but they are all interconnected and can share info and diagnostics with each other. I am fortunate that I live in Phx and relatively close to the Mayo here...they are a huge and very proactive help. Mayo loves challenges and they are as well informed as any of the WG places. It seems to me that your current medical group is lacking some efficiency skills...Mayo would've already been all over this. I got my appointment and within 11 days was rediagnosed, confirmed, and on treatment...one never knows with this disease, but it seems to me, if at all possible, you want the most experienced assistance with WG...period. Take care, be persistent, and patient!

[mishb]

In Australia, doctors, and especially assistants or receptionists, are not allowed to give out results over the phone unless it is a regular blood test result and then you phone and most times they will say, you will need to come in a discuss them.

In 2009 I had 3 breast lumps biopsied and needed to make an appointment with my regular doctor to get the results. Even before my appointment date I received a call from my doctors receptionist saying that the doctor needed to see me urgently...did I think I could get in there ASAP.
Thinking the worst, I took my eldest daughter with me for support. We only waited in the waiting room for about 10 minutes (normal wait about 45 mins) before being called in.
The doctor said, "I am so glad you could come in so quickly, I wanted to give you the great results as soon as I got them, the lumps were benign"
Arrghh. my daughter wanted to knock the doctor out, there and then.

Therefore, Maria, my guess is that they don't want to give you the results over the phone, because they will need to speak to you about them. Knowing that you had an appointment they probably figured it could wait. You are hoping they will say WG ..... you have already been on this forum and know most that you need to, to enable you and your daughter to get by, but the doctors don't know that you are aware of the facts and they will need to sit you both down and discuss the outcome, the medications....and their "where to from here" speech.

I wish you both all the best of results for tomorrow

[delorisdoe]

well put. :thumbsup:

[delorisdoe]

Maria, did you get the biopsy results? I had a biopsy on my nose that I never heard the results for presumably because they were inconclusive. same with my hiv test a while ago.

[freakyschizogirl]

In 2009 I had 3 breast lumps biopsied and needed to make an appointment with my regular doctor to get the results. Even before my appointment date I received a call from my doctors receptionist saying that the doctor needed to see me urgently...did I think I could get in there ASAP.
Thinking the worst, I took my eldest daughter with me for support. We only waited in the waiting room for about 10 minutes (normal wait about 45 mins) before being called in.
The doctor said, "I am so glad you could come in so quickly, I wanted to give you the great results as soon as I got them, the lumps were benign"
Arrghh. my daughter wanted to knock the doctor out, there and then.



So sorry mishb but i had to laugh - how can he put you through all that worry. It would've been a bigger sigh of relief had they rang you and said dont bother coming in - all is well. Some doctors ay?

My first nose biopsy was inconclusive and was followed up by one positive ANCA blood test and a second which came back negative so i was sent back out into the world with my sinus symptoms for another 3 years until another biopsy was positive and so was the ANCA.

[delorisdoe]

So sorry mishb but i had to laugh - how can he put you through all that worry. It would've been a bigger sigh of relief had they rang you and said dont bother coming in - all is well. Some doctors ay?

My first nose biopsy was inconclusive and was followed up by one positive ANCA blood test and a second which came back negative so i was sent back out into the world with my sinus symptoms for another 3 years until another biopsy was positive and so was the ANCA.

you are brave. I hated the nose biopsy and have refused to ever go to an ent again. It was awful. 2 how horrible.

[freakyschizogirl]

Yep and the second was deeper. But it got me that all important diagnosis.

I've left that hospital completely now - the ENT's werent really prepare for someone as rare as me (tho they claimed to have seen Wegs patients before) and dont even get me started on the Rheumy.

[pberggren1]

I've had 2 nose biopsies. One when I was asleep when I first got sick with Wegs and showed positive. The other one was when I was awake and not necessary at all and showed negative.

[freakyschizogirl]

I dont think i could've had one while being awake - i woke up crying hysterically after the second biopsy as it was!

[pberggren1]

Ya, I can understand for sure. It is not nice to have a knife digging around your nose while you are awake and seeing bloody tissue coming out.

[delorisdoe]

I was awake for mine...it was awful. He kept telling me how great i was doing. that did not make me feel better. He was nice but i hate him.

[pberggren1]

The guy that did mine while I was awake is a total jerk. He should not be in medicine at all. I was keeping him from a golf game.

[freakyschizogirl]

He was nice but i hate him.

LMFAO Leigh! I have this relationship with many doctors!

They told me being awake for surgery wasn't an option and as much as i hated being put asleep i am so glad i wasnt awake!

[delorisdoe]

ya, he was the kindest and most bedside manner of any doctor I have ever had but I literally ran out the door as he was yelling to me "book an appt for 6 months" . My treating doctor found it quite amusing and told me that I will only need to go back to him if my sinuses became more involved. Fingers crossed they never do.

[Chris G]

OMG you guys are killing me! How horrible! This is exactly why I refused the biopsies!!!

I'm an official unconfirmed weggie because of it.

[mishb]

[QUOTE=freakyschizogirl;49121]So sorry mishb but i had to laugh - how can he put you through all that worry. It would've been a bigger sigh of relief had they rang you and said dont bother coming in - all is well. Some doctors ay?

That's okay Sam, we can laugh about it now too, but as I said, they are not allowed to tell you anything over the phone.
My doctor was a she, and she thought she was doing the right thing...the same happened to my mum when she had some skin cancers removed. I think the doctors feel they are doing a good thing by telling you the good news personally.

Maria, I hope you have had some good news by now :thumbup: or any news???

[Al]

I think the doctors feel they are doing a good thing by telling you the good news personally.


Hmmm....for those of us who live in a place where we have to pay out of pocket for any office calls the insurance doesn't cover, Michelle, we tend to view the "personal good news" a little more darkly: A way to transfer a little more wealth from my estate into the coffers of the medical-industrial complex. I had an appointment a coupe of days ago. Turns out that the clinic was installing new registration and billing software, supposedly for increased efficiency. No one knew how to use it, so of course, schedules were running way late. I decided that they were just paying for the fancy new software through increased parking fees....

Al

[maria garcia]

We went to our appointment and the Biopsy was positive for conjunctivities associated with certain rheumatologic diseases. Because she is Positive for Panca and MPO the eye specialist said this is positive for AI Vasculities. He could not tell me which one it falls in. But he said there all about the same swelling in the veins, just some differences like Wegeners and granulomas etc. but they're all treated the same depending on the organs affected. He wants her on MTX starting low dose and upto 15 mg. He sent us to our Rheumy for the medication.
I hope we don't have and issue with rheumy. He is the one who told us episclerities had nothing to do with Immune disorder, vasculities.

[Al]

We went to our appointment and the Biopsy was positive for conjunctivities associated with certain rheumatologic diseases. Because she is Positive for Panca and MPO the eye specialist said this is positive for AI Vasculities. He could not tell me which one it falls in. But he said there all about the same swelling in the veins, just some differences like Wegeners and granulomas etc. but they're all treated the same depending on the organs affected. He wants her on MTX starting low dose and upto 15 mg. He sent us to our Rheumy for the medication.
I hope we don't have and issue with rheumy. He is the one who told us episclerities had nothing to do with Immune disorder, vasculities.

Maria--the fact that the eyes are involved suggests GPA (Wegener's) though they say that only 20-30 percent of GPA cases are associated with P-ANCA. But the treatment is the same. MTX is a standard med except for when there is severe kidney involvement. I don't know why the eye guy didn't write the prescription himself. Did he send the report back to the rheumy?

Al

[Chris G]

We went to our appointment and the Biopsy was positive for conjunctivities associated with certain rheumatologic diseases. Because she is Positive for Panca and MPO the eye specialist said this is positive for AI Vasculities. He could not tell me which one it falls in. But he said there all about the same swelling in the veins, just some differences like Wegeners and granulomas etc. but they're all treated the same depending on the organs affected. He wants her on MTX starting low dose and upto 15 mg. He sent us to our Rheumy for the medication.
I hope we don't have and issue with rheumy. He is the one who told us episclerities had nothing to do with Immune disorder, vasculities.

I'm glad that you have at least some type of answer to this mystery. However, I fear that if the original rheumy was not knowledgable enough to know that episcleritis is a symptom of vasculitis, he is NOT qualified to treat it!! In fact, I feel certain that he's not qualified.

Did you ask the eye doc at U of Miami to refer you to THEIR rheumatology department? They list wg as one of the diseases they treat.

[mishb]

Hmmm....for those of us who live in a place where we have to pay out of pocket for any office calls the insurance doesn't cover, Michelle, we tend to view the "personal good news" a little more darkly: A way to transfer a little more wealth from my estate into the coffers of the medical-industrial complex. I had an appointment a coupe of days ago. Turns out that the clinic was installing new registration and billing software, supposedly for increased efficiency. No one knew how to use it, so of course, schedules were running way late. I decided that they were just paying for the fancy new software through increased parking fees....

Al

We are the same here Al, we can it revenue raising. Everyone says the only reason they wont give results over the phone is because they don't get any money that way. We normally have a small out of pocket expense when we visit the doctor and then the Government covers the balance. Unless you are on a pension or are a low income earner and then the Government pays the lot.

[mishb]

Maria, I'm am so glad your daughter finally has some sort of diagnosis and will start on MTX and be on her way to feeling a little better.

After 12 months of WG I have now been told that I probably don't have it, but that I definately do have vasculitis disorder of some sort, so I am now in the same boat.
But as you say and they also told me, the medication/treatment is exactly the same.

Therefore, why do we need a name for it ...... we will just be us.

I wish her well with the medication and hope it is a step in the right direction.
Take care and .........

[maria garcia]

Michb have you been C anca or P anca? Any granulomas?

[maria garcia]

I am so confused about the Ancas. My daughter had a negative P anca and a week later positive high P anca. Why? I wonder if something is triggering the change. I know they always say it not 100% accurate but to go from negative to positive within a week!!:confused1:

[maria garcia]

Chris, I did ask about a Rheumy and he said they are making changes in the dept. He gave me a name of a rheamy not in UM. I called today and they didn't know what vasculities was. I was very dissapointed. I did speak to someone in the rheumy dept at UM explained my situation and he said they don't see children But he asked me to fax all her paper work and he was going to give it to a Dr. who he thinks would be interested and he would let me know who the best Dr. for Vasculities is. It was really weird the guy was like an assistant in the Dept and was so nice to try to help me. He probably heard the desperation in my voice when I kept saying I needed to find the best. He also new the Dr. my daughter has now and he says he has heard bad thing about him. I go back next Friday and Im really interested in what he is going to say. He better put her on meds or I think my husband will get violent. Iasked that question to the eye specialist and he said he was going to talk to him and not to worry that the Rheumy would prescribe the MTX. I will keep you posted.

[Al]

I am so confused about the Ancas. My daughter had a negative P anca and a week later positive high P anca. Why? I wonder if something is triggering the change. I know they always say it not 100% accurate but to go from negative to positive within a week!!:confused1:

Maria--It;s confusing to me too. A "negative" ANCA titer means that ANCA were not detected. A positive titer means that ANCA were detected. The test itself is pretty accurate, though there can be different interpretations. By the way, while ANCA can be determined in a blood test, whether they are P-ANCA or C-ANCA is seen in the staining method used in looking at a biopsy sample under a microscope. That would meant that a pathologist made the determination. Usually, doctors listen to the pathologist. This process seems off-kilter somehow.

Al

[Al]

Chris, I did ask about a Rheumy and he said they are making changes in the dept. He gave me a name of a rheamy not in UM. I called today and they didn't know what vasculities was. I was very dissapointed. I did speak to someone in the rheumy dept at UM explained my situation and he said they don't see children But he asked me to fax all her paper work and he was going to give it to a Dr. who he thinks would be interested and he would let me know who the best Dr. for Vasculities is. It was really weird the guy was like an assistant in the Dept and was so nice to try to help me. He probably heard the desperation in my voice when I kept saying I needed to find the best. He also new the Dr. my daughter has now and he says he has heard bad thing about him. I go back next Friday and Im really interested in what he is going to say. He better put her on meds or I think my husband will get violent. Iasked that question to the eye specialist and he said he was going to talk to him and not to worry that the Rheumy would prescribe the MTX. I will keep you posted.

Something very wrong here, Maria. A university medical school doesn't know what vasculitis is? I can't believe it. This needs to be sorted out.

Al

[bdsmak]

Question.....If I have Wg severely in my sinus - no septum - tissue destroyed all the way to the base of the skull...is it LIKELY I will get Wg in my eyes, and what are the symptoms in the eyes?

[Sangye]

That is a question for a Wegs specialist. They know the statistics and the way severe facial involvement tends to progress.

[mishb]

Michb have you been C anca or P anca? Any granulomas?

Maria, mine is C-Anca (PR3) and only one small granuloma from a deep tissue sinus biopsy.

I have had 4 positive C-Anca blood test results and the 5th one done a couple a weeks ago is now negative, however ANA which is normally negative is now positive. Got doctors stumped at the moment.

[Al]

I have had 4 positive C-Anca blood test results and the 5th one done a couple a weeks ago is now negative, however ANA which is normally negative is now positive. Got doctors stumped at the moment.

(For those who are wondering, ANA (Anti-Nuclear Antibody) is another kind of antibody produced by B cells. It is associated with certain other autoimmune disease--in particular, SLE--Lupus.)

Dang ia all, Michelle, can't you give it a rest...? Knock it off with these stupid antibodies already--and just as you have whacked down the ANCA!

Al

[mishb]

(For those who are wondering, ANA (Anti-Nuclear Antibody) is another kind of antibody produced by B cells. It is associated with certain other autoimmune disease--in particular, SLE--Lupus.)

Dang ia all, Michelle, can't you give it a rest...? Knock it off with these stupid antibodies already--and just as you have whacked down the ANCA!

Al

It's going to all be a bad dream soon Al, I will wake up and there will be no muscle or joint pain, no sinus problems or blood noses and no Anca or ANA :unsure:
and it will appear as if I have been wasting all the doctor's time and money...........Oh to dream :sleep::sleep:

[pberggren1]

As Perry Como would say: come dream along with me.

[Al]

It's going to all be a bad dream soon Al, I will wake up and there will be no muscle or joint pain, no sinus problems or blood noses and no Anca or ANA :unsure:
and it will appear as if I have been wasting all the doctor's time and money...........Oh to dream :sleep::sleep:

The dreaming bit sounds pretty Shakespearean, Michelle, though I wouldn't worry about wasting the doctors' money! Shakespeare, or something out of the Book of Revelation: "....wipe away all tears from their trashed eyes and sinuses....", or, if I remember right, Isaiah: "There will be no muscle or joint pain, no sinus problems or blood noses and no Anca or ANA, and nation will not take up sword against nation nor will they train for war anymore." Oh, please, my friend, dream...dream....

Al

[pberggren1]

You are too funny Al. I did not know that Isaias prophecized about ENT stuff.......lol

[Al]

You are too funny Al. I did not know that Isaias prophecized about ENT stuff.......lol

It's been a while since I've read the stuff, Phil. Prednisone may have affected my memory!

Al

[delorisdoe]

and it will appear as if I have been wasting all the doctor's time and money.....:

I actually think about that too sometimes...must be a bi product of free health care

[Chris G]

Maria - I can't imagine what type of chages in the rheumatology department within the U of M Health system, would cause your eye doc to send you to an outside rheumatologist who's not even familiar with vasculitis! I'm glad that you found someone at U of M to help you. My advice, is to stay in contact with that person, and try to get her in there ASAP. To have her eye specialist and rheumy in the same health system is a bonus. It's nice to have a team approach. I would not waste another second of my time with the original rheumatologist - and keep your hubby away from him just in case! :w00t:

She's nearly an adult! Isn't she turning 18 very soon? I can't believe they would turn you away at this stage!

(sorry about the bold face font - I couldn't get it to turn off!!)

[maria garcia]

Chris, I could not believe it either! Ok so there going through some changes bcse the director of the dept is no longer there. But SO,I can't believe there are no other doctors there he can recommend. Then he recommends one which is not familiar with vasculities, wegs etc. My husband says all I do is complain but none of this is making since. So again Im searching for a better rheamy. We do have an outreach clevland clinic about 1 1/2 hours away but they only take adults she will be 18 next month. They also don't take her insurance. So I might be looking at a change. Ill see how it goes on Friday.